28 Days Old: This was the first day I got to hold London – for about 45 minutes. He was 28 days old. If he was having a good day, one person was able to hold him for (up to) an hour. This continued until he was almost three months old. You can see how tiny his limbs are in relation to my fingers.
At ChildServe, the passion our team members have for our mission is often shaped by personal experiences with specialty healthcare. In honor of Prematurity Awareness Month, Shonda Hershberger, referral relations specialist at ChildServe, shared a personal reflection from her days as a new mom.
As a first-time mother expecting triplets, I knew I wouldn’t carry them a full 40 weeks, but I didn’t expect to have them as early as we did. My sons Kai, Boston, and London were born prematurely at 25 and 26 weeks, with a combined total weight of 5 pounds, 11.5 ounces. I couldn’t have imagined all that we’d face from such an early arrival.
In the days after their birth, things would be improving for one child and getting worse for another. It was a constant rollercoaster. Despite how tiny the boys were, we didn’t immediately realize all the things that could go wrong, and we certainly didn’t think we would lose any of them.
Two of the hardest days in my life were when we lost our son Boston on day 2, and our son Kai on day 15. It’s impossible to prepare yourself for the loss of your child. The care team was still fighting daily to help London survive, so despite being heartbroken, I couldn’t fully grieve our losses. It felt like I needed to know London was going to make it before I could process losing two children.
Friends and family told us how strong we were. It was nice to hear, but it wasn’t how I felt inside. I had no choice but to show up – I wasn’t strong, I was just getting by. What other choice did I have but to show up for my surviving son?
We stayed in the NICU with London through different surgeries and ups and downs. We fought to reach milestones that many parents take for granted – like holding our baby for the first time. The nerve endings in London’s skin were underdeveloped, he wasn’t stable, and we couldn’t pick him up. We had to be sure only to place a constant pressure on his skin instead of gently stroking or patting him. If he was fussy, the nurses played recordings of my husband and I reading children’s books to help soothe him at night. When London was 28 days old, I finally got to hold him for the first time.
After 121 days in the NICU, London came home. We said our goodbyes to the amazing care team, and were relieved to be home instead of constantly driving back and forth to the hospital. While this was a huge milestone, it was also the start of a new journey. London remained on oxygen for over a year. He learned to crawl and walk with it on, pulling the cord along behind him. We were able to discontinue oxygen when London was 14 months old, but fighting off respiratory illness is something he continues to struggle with, even as a teen.
It was a surprise and blessing to discover we were pregnant again. Our daughter Camden was born when London was 16 months old. She was born prematurely at 36 weeks, so I became a NICU mom twice over, greeting the same team we said goodbye to the year before. We didn’t face many of the life-threatening challenges we did with the boys, but as with any baby born early, there were obstacles to overcome.
We’ve come a long way in the years since our NICU days. My husband and I are grateful that we’ve seen our kids play volleyball, basketball, and be competitive athletes in cross country. We heard the shock in the running coach’s voice when I told him that London couldn’t breathe on his own as a baby. When I think about their birth, I know that every step and breath my kids take is a miracle.
London at 7 weeks. He was still under 3 pounds, despite being 7 weeks old. I was doing Kangaroo Care, skin to skin holding that calms babies and allows them to bond with parents. He’s still tiny here.
Medals with sis: Camden and London after a track meet.
London at 10 months. Still on oxygen, but home for Christmas
XC meet with PawPaw: Camden and London with grandpa after a XC meet
I know there are moms and dads out there who have faced similar journeys, and many people who know someone whose baby was born prematurely. I hope the following tips help fellow NICU moms and dads to feel seen and understood, and provide helpful insight for friends and family:
- I might not let you hold the baby.
- When your child has an underdeveloped immune system, getting sick could send them to the hospital. Parents have to take extra precautions to keep them healthy – including limiting visits or not letting others hold the baby. After London came home, we asked friends and neighbors to keep their distance, and we had to skip Thanksgiving and Christmas with our families the first year.
- Premature birth doesn’t just affect mom, dad, and baby.
- Our extended family and our friends experienced the highs and lows with me and my husband. I can only imagine the amount of questions, fear, and concern siblings might experience, even when they’re very young. As you support someone whose baby was born prematurely, don’t forget to check in with the whole family. If you are family – know that it’s okay to be experiencing strong emotions too, and take time to care for yourself.
- It’s okay not to know what to say:
- It’s tough to reach out when people are grieving and stressed. You don’t have to have all the right words, and we don’t expect you to. Being there means more than anything you can say. Many people who were there for my family focused on our daily needs. They showed they cared by offering to bring us dinner, give us rides to the hospital, get our mail, and more. Sometimes I didn’t realize I “needed” help with something until a friend offered to take care of it for me.
- Coming home is just the beginning:
- Coming home from the NICU is the start of a long journey for many NICU babies. As excited as we were to come home, it was scary to leave behind our expert care team at the hospital. When London came home we had to figure out his monitors, oxygen supplies, therapy appointments and more. I’ve heard from many parents that share this experience: when you pass one healthcare hurdle, another one pops up on the track.
- NICU families stick together:
- Even though I would say it’s very much a club you don’t want to join, within the NICU community, people advocate for each other and are there for each other. Consider joining a group like Holding Tiny Hands, that works to provide encouragement, strength, & support to families with newborns in intensive care. You don’t have to face your journey alone.
Believing in the Spirit of a Child
During our stay at the NICU, we grew very attached to the head neonatologist Dr. Teri Wahlig, who is now the CEO at ChildServe. She sat with us through difficult decisions, and listened carefully to all our questions. And we weren’t “special” – she shared this incredible caring spirit with all of her patients, and we knew she wanted the best for our children.
It’s amazing to me that our paths crossed again at ChildServe, 15 years later, but in another sense, it’s not that surprising. ChildServe’s mission is to help children with special healthcare needs live a great life. When you know babies born prematurely and see the odds stacked against them, you’d do anything to give them a better fighting chance. I’m proud to be part of helping many kids born prematurely move forward with life-changing services at ChildServe.
ChildServe offers a wide range of services to support babies born prematurely, including our developmental clinic, transitional care unit, outpatient therapy, durable medical equipment and much more.
ChildServe improves the health and well-being of 4,600 children each year through specialized clinical, home, and community-based programs and services. We serve children with developmental delays, disabilities, injuries, and other special healthcare needs.